2 Why the InterestNAS Lorna Wing Centre increasing number of girls and women referred for diagnosisHistorically there has been a strong gender bias of more males than femalesAutism presents differently in femalesFemales mask symptoms better than malesAs a result professionals are less likely to diagnose girls / women even when symptoms and behaviours are evidentAutism in Pink project learning about women with autismThe Lorna Wing Centre

3 Referrals to the Lorna Wing Centre for AutismMost likely through Mental Health ServicesSome of the co-morbid diagnoses are:Obsessive Compulsive DisorderEating DisordersPersonality DisordersSelective MutismAnxiety and DepressionTaking an appropriate developmental history reveals the possible underlying problem of an ASD with an additional diagnosis or mis-diagnosisThe Lorna Wing Centre for Autism

4 The Lorna Wing Centre for Autism 2015PrevalenceOverall prevalence of autism spectrum disorders is 1 in 100What of the male / female ratio?Fombonne (2005) reviewed 37 epidemiological studies of autism and related disordersThe male / female ratios varied from 1.4 to 1 to 15.7 to 1There is still a strong gender bias towards diagnosing boys (linked with descriptions in the International Classification Systems)The Lorna Wing Centre for Autism

5 The Lorna Wing Centre for Autism 2015The core difficulties in autism are the same for males and femalesNeither women or men with autism consistently conform to the stereotypeThe way autism affects individuals is highly variableThe Lorna Wing Centre for Autism

6 The Diagnostic CriteriaThe current systems do not give examples of types of difficulties shown in girls and women and are not good at recognising autism symptoms in girls and womenThe methods used to diagnose are skewed to the male presentation of the conditionThere is a need for a wider perspective regarding social, communication and imaginative dimensions in addition to special interests and rigidity of behaviourThere is a need to ask the right questions and make appropriate observationsThe Lorna Wing Centre for Autism

7 The Lorna Wing Centre for Autism 2015Gender DifferencesThe Revised Autism Spectrum Screening Questionnaire (ASSQ-Rev) Kopp et al 2010 highlights certain items that separate girls from boys on the autism spectrumQuestions in the Diagnostic Interview for Social and Communication Disorders (DISCO) Wing et al 2002 highlight the differences in the girls for all aspects of the Triad and routines / interestsThe Lorna Wing Centre for Autism

11 Overall Aims of ProjectUnderstand the prevalence of women with autism in EU countries involvedLearn more about lives of younger women with autism in different European countriesIncrease the public’s awareness of women and autism.Contribute to improving lives of women with autism.Improve knowledge of the people supporting and working with women with autism.Improve knowledge of the state and community in general- inform policy

13 Qualitative InformationPWI – the Personal Wellbeing Indexforms the starting point for the framework of the learning material to be created in workshops.all partner countries have identical domains.Domains can be adjusted to each countryCan reflect broad range of abilityThe Lorna Wing Centre

15 Personal Wellbeing Index PWI (Cummins et al; Deakin 2006)“Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer.”Questions and [domains]How satisfied are you with…?your standard of living? [Standard of Living]your health? [Personal Health]what you are achieving in life? [Achieving in Life]your personal relationships? [Personal Relationships]how safe you feel? [Personal Safety]feeling part of your community? [Community – Connectness]your future security [Future Security]your spirituality or religion? [Spirituality – Religion]The Lorna Wing Centre

16 Personal Wellbeing Index PWI (Cummins et al; Deakin 2006)“Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer.”123456789100= No satisfaction at all = completely satisfiedThe Lorna Wing Centre

17 The UK perspective Women and Autism Workshops Sylvia Kenyon with Emily and Deborah HillierIntroduce us?Emily, Debbie and I are going to talk about the Autism in Pink workshops in the UKWe held 12 workshops over a period of 15 months, the final one was in January 2014.The Lorna Wing Centre

18 The UK group Quantitative Information12 female research volunteers between the ages of 18 and 4010 with diagnosis of Asperger syndrome1 with diagnosis of Atypical Autism1 with diagnosis of AutismAverage age of volunteers – 30 years3 volunteers were diagnosed as children under 129 volunteers were diagnosed as adults (after age 18)The average length of time that those diagnosed as adults have had their diagnosis is 2 yearsStarting with a very little bit of quantitative infoThe group that attended the UK workshops consisted ofThe Lorna Wing Centre

19 Main Aim of WorkshopsCreate learning materials by women with autism for women with autism, also for families, carers and professionalsOther important hoped for outcomes:Learn more about women with autismContribute to improving lives of volunteers and women with autism in generalCreate a forum where women with autism could enjoy meeting each otherThe Lorna Wing Centre

21 Impact of UK workshopsWomen enjoyed workshops and the structure provided by the PWI (rather than abstract discussion).Enjoyed meeting other women and sharing strategies and experiences.Pleased to contribute to research and to formation of learning materialsThe Lorna Wing Centre

22 Results of workshops for all CountriesThe women in the different countries showed a range of experiences. Overall what stood out was:Consequences of autism still associated with men impacts on the lives of women, ranging from difficulties in getting a diagnosis, to difficulties in their basic human rights being upheld.Public need to be aware of “masking” of autism characteristics lead to extreme stress and exhaustion which appears to take place more in women than menFuture insecurity a significant issue for participantsThe Lorna Wing Centre

23 Continued….A need for society to be more understanding, accepting and supportive and to be aware of autism, but at the same time treating people with autism as individuals, each with their own value to contribute.People with autism have a “spikey” profile of strengths and areas of need, this variability needs to be recognised.The need for future gender specific studies.The Lorna Wing Centre

24 Project Aims AchievedQuestionnaires and Interviews with women volunteers with autismWorkshops with volunteersLearning Materials for women with autism and for families, carers and professionalsTraining Presentation for families, carers and professionalsTV documentary filmOnline book of life experiences by women volunteersVisit European Parliament in Brussels to brief MEPs and lobbying groups about findingsInternational Autism in Pink Conference in Lisbon-May 2014

25 The Importance of DiagnosisFrom the Autism in Pink project it was recognised that for females a late diagnosis was the ‘norm’A late diagnosis reflected the ‘hidden’ nature of the conditionA diagnosis is the starting point in providing appropriate supportA timely diagnosis can avoid the difficulties women and girls experience throughout their livesDiagnosis can lead to assessment of needs in education, leisure, housing, social relationships and employmentThe Lorna Wing Centre

26 Find out Morefor the ebook Breaking the silence (contains the personal stories of some of the women who took part in the project, research reports, presentations from the projects International conference and study trip to Brussels to meet MEPs and other project outputs)Watch the 35 minute Autism In Pink documentary available on YouTubeThe Lorna Wing Centre